‘Change your appearance so you can be a little kinder on yourself,’ a date once told Melbourne writer and activist Carly Findlay, referring to the genetic skin condition that leaves her skin forever scaly, itchy and shiny red. Too many people, assuming Findlay’s face is flushed crimson with severe sunburn, take the opportunity to publicly scold her. Or worse. ‘If I was in your situation, I’d top myself,’ someone once told her. She tries to adopt a more or less stoic attitude toward the daily ‘staring, commenting and teasing’, knowing it is part and parcel of life with a visible disability.

Findlay’s disability is doubly public, for she writes openly through her blog and social media about life with ickthyosis, an incurable condition that affects only 10 to 20 people per million. With heartfelt missives that read more like deeply personal letters, Findlay, who is 32, bares her private self to a world already looking, questioning and commenting on the outer shell they see. ‘I like to tell my story on my own terms,’ she says. In a tone that suggests she has previously faced the kind of hatred that internet anonymity breeds, she adds: ‘I think you do have to have thick skin.’

Storm of ridicule

It happened late last year. She saw an incoming link to her blog from the user-submitted ‘social news’ website Reddit, clicked through and found her photo had been uploaded to a storm of ridicule. One person suggested she looked like ‘something partially digested by my dog’. It was Findlay’s worst fear, the reason she had initially balked at putting her picture online when she first began blogging in 2001. ‘I don’t get many negative comments on my blog [normally] but I had comments coming over telling me I should kill myself,’ she says. ‘It was weird.’ She decided to fight back with a measured, informative response. It garnered an apology from the person who originally uploaded the photo and support from others who clicked through. Still, it hurt.

‘Just writing down the things that people have said to me, these harsh things, it’s like I’m just playing them back in my head and laughing them off’

A month later, the internet, like the fickle beast it is, gave her an opportunity to connect in a more positive light. Scouting around Twitter one morning in January, Findlay happened across the hashtag, #AbledPeopleSay, through which people with disabilities were documenting things said to them as they went about day-to-day life. The trail led back to American disability activist Lydia Brown, who coined the hashtag to share remarks made daily about her own disability, autism. Things like: ‘If you try harder, maybe it will just go away.’

Dozens of people with disabilities – physical, mental, visible, invisible – were soon chiming in from around the world, including Findlay, who has received such comments as: ‘I know exactly how it feels to have a severe skin condition, I have my eyebrows waxed monthly’, ‘It’s so good that someone like you is out there and not locked away somewhere’, and ‘Don’t you wish there was a cure so you’d look a little less … unfortunate?’

As the Twitter comments multiplied into the hundreds, Findlay was reminded how intrusive people can be towards those with disabilities. But, she says, sharing those words was also surprisingly cathartic. ‘Just writing down the things that people have said to me, these harsh things, it’s like I’m just playing them back in my head and laughing them off.’

Faced with the almost daily barrage of naive or intentionally hurtful comments, Findlay mainly manages to keep her cool, responding politely or laughing it off, skills she learnt as the kid who looked different growing up in a small town near Albury in New South Wales. Occasionally the judgements cut deep, leaving her reeling and upset. Very rarely does she let anger get the better of her, like the time she lobbed the f-bomb in the face of a taxi driver who spluttered ‘what’s on your face?’ before suggesting she smelt bad. ‘I think there’s this expectation that people with disabilities should be meek and mild and polite and just take it,’ she says.

But it can be hard living up to that expectation. ‘Sometimes,’ she says, ‘I just want to get on with my day. I don’t want to be the person who scares a child on the train or be the brunt of teenagers pointing.’ Findlay understands that some people don’t know how to act around those with disabilities, yet she wishes they would at least kick off conversations sans empty platitudes and with a touch of politeness, just the way they would with anyone else.

Words cut deep

The unofficial Twitter campaign seemed to empower people. That week a woman wrote to Findlay, said she’d been holding on to a secret for years, a barbed sentence spat at her by another person, words that cut so deep it hurt even to write them down. She wrote those words to Findlay and something shifted. ‘People tell me their secrets,’ Findlay says. ‘It’s kind of privileged.’

‘I think there’s this expectation that people with disabilities should be meek and mild and polite and just take it’

It’s a trust bred from Findlay’s own willingness to share publicly the intimate details of her life. She looks inside herself, ‘for the shiny bits and the darkness’ and comes to know herself through writing. It’s therapeutic, in a way, for herself and her readers. Recently, Findlay got a boyfriend and immediately began writing about the strangeness and the joy of sharing her life with another. ‘I shed so much skin,’ she writes. ‘Initially I would brush it off his clothes, embarrassed I’d leave my mark on him. I’d worry about the skin in my bed. I’d worry about my peeling face in the morning or how my skin would fall onto him. He has said countless times that it doesn’t bother him. He finds my skin flakes in his pocket and smiles that he’s carrying me with him wherever he goes.’

Her frank, direct words have caught the eye of major news organizations and led to a flurry of speaking and disability activism opportunities. She has won a bunch of awards too; yet, Findlay says, she doesn’t always feel like the journalist she has become. She is just telling her own story, in her own words. Then again, she realizes this is where her talent and power lies, especially when communicated through direct channels like Twitter. ‘Because it’s real people telling their story, it hits home. It’s a start in creating change.’

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